Butterfly Farm

We are so blessed to have a butterfly farm right around the corner from our house.  We have been there on field trips before, but it has been a long time since we have been back- too long. 

Ms. Nora begins with a presentation about the butterfly, its life cycle, and the differences between moths and butterflies.

Julia was the butterfly in her chrysalis...

Rachel was the moth.  Moths build a cocoon with their "friends"...

and then it was time for them to all break out...

After the presentation we moved into the butterfly house.  They were everywhere you looked and were very active that day. Such beautiful monarchs...

The kids are given cotton pads soaked with sugar water.  These treats are like ice cream cones to the butterflies and they happily drink from them while being held. The kids are taught how to let them taste so they can pick them up.

The girls had fun determining if they had boys or girls.  One has black spots on its wings, the other doesn't...

In the corner, the butterflies congregate on the milkweed plants to lay their eggs.

From the eggs, hatch caterpillars the size of an eyelash! They milkweed nonstop and grow 3,000 times their birthweight in two weeks!!

Then they hang upside-down in a j-shape to make their chrysalis- a beautiful green sack, lined at the top with tiny sparkling "jewels"...incredible! When the chrysalis becomes clear, out comes the butterfly!

Carter was quite the "butterfly whisperer"...

By the end, his arms were full...

Julia was just enchanted by the experience with these beautiful creatures...

After our time in the butterfly house, it was time to cool off in the misters...

Aaaaahhhhh, so refreshing!!

The Backyard World

When the weather turns warm, the backyard becomes one of our favorite places to be. Made even better by some water and some great friends.  The kids had a ball fishing in the pool...

and trying out all the riding toys...

Then they were off to the playhouse.  Carter and Jack decided to take out the weather vane and replace it with the American flag...

Next thing I knew, Carter had them all standing at attention, saluting, and singing the Marine Corps Hymn (even little David!)...

After a yummy lunch and ice cream cups it was time for a VBS dance party!

I love hearing their little voices belting out praise...

Such a great day of fun!

Every 4 Hours...

Every 4 hours, one of the 40,000 children in this country in treatment for cancer, earns their angel wings and loses their lives to this ravaging disease.

Every 4 hours. That's 3,000 children every year.  It is the leading cause of disease-related death for American children... our children.

Every 4 hours, parents are forced to watch their child die right before their eyes, helpless to do anything to stop it. There is no word in our language for a parent who loses a child.

Every 4 hours, brothers and sisters lose their siblings.  It creates a hole that no one else can ever fill.  For some they are now only children.  A piece of their heart, heritage, life, and identity has been taken and can never be repaired.

Cancer is relentless.

This past weekend we said goodbye to another beloved child from Brenner's.  Emmy, was an amazing little 7 yr old girl- full of spunk, sass, compassion, wisdom, joy, and optimism.  Her cancer overtook her little body on Friday morning.  She was sleeping between her parents and reached up asking to be picked up.  At that moment Jesus picked her up and lifted her into His presence. If you have ever wondered what these children experience at the end.  This has been the case for so many.  Just this month four of the children we know who have earned their wings all passed away in the same way.  They looked up and smiled and asked to be picked up.  Some were even able to stand from their death beds after days of not moving and walk across the room to be lifted up.  In the midst of such heartbreaking loss it is comforting to know that Jesus carries them up Himself. They can see Him.

The kids had a chance to play with Emmy this past Christmas at the Polar Express party and really get to know her better.  She is the ultimate hostess making everyone, especially the kids feel at home. That's her in her red pajamas... 

This past March when Julia had her surgery, Emmy was in the hospital with us.  After 3 difficult days, Julia was out of bed for the very first time and landed at the art table, right across from Emmy.  Within seconds Emmy was talking with Julia.  They were discussing their favorites- colors, animals, names, flavors, etc.  We had been having a really tough time getting Julia to take her medications and to cooperate with her procedures.  Emmy, lovingly, in her own little way talked Julia through each one- giving advice and all the tips and tricks she had learned.  And Julia listened.

That's just who Emmy was.  She was the first to speak up if she needed something or wanted something done differently, but she was also the first to look out for all those around her.  Emmy battled neuroblastoma for 3 years- half of her short life- both at Brenner's (an hour from her home) and in NY.  Emmy's battle was far from easy and cancer took so much from her, but it never changed who Emmy was as a person.  Her personality and heart continued to shine through as she played with her older brother, had crazy fun with all her girlfriends, and lived every moment of her life to the fullest.  And through it all she never stopped loving those around her.  Not just her family and friends.  Emmy routinely made sure the other kids at the hospital were taken care of and received the things they needed.  She often would donate toys to the family crisis center where her mother worked because those kids needed them more.  She would tell her mother to go back and help the families, she was fine at the hospital with her dad. Emmy knew what life was all about and she lived her life well.  She knew her Savior and walked through this battle with Him.  She knew why she was here and she accomplished what God had set before her with all the grace, spunk, spirit, and joy God could fit into her 7 year old little body.

It is still a shock to me that Emmy is not here on this earth any more.  I think I will still look for her when we're at the hospital.  It is hard to imagine someone so full of life being gone.  As much as we will miss her, I know her spirit and all the many "Emmy stories" will live on for a long time. Thank you, Emmy.  The world is a better place because you were in it.

Please pray for Emmy's parents- Rod and Dare, her big brother Hayden, and all her little friends who are missing her terribly and finding their way in this world now without her.

And for the thousands of other families that experience this every 4 hours... every single day.

Playgroup Pool Party

Summer has arrived! Friday we had our first opportunity to go swimming and the kids LOVED it. Is their anything more fun than a day of swimming with your friends? 

There were even popsicles!

Natalie and Jenna were so sweet, happy, and cuddly.  Then it was off to dreamland...

This little face brings me so much joy.  How can you not smile when you see that? David seems to always have a beaming smile on his face...

Tube Troubles

We noticed Wednesday that Julia's cecostomy tube would not stay closed.  It appeared fine but the door just hung open no matter how many times we tried to push it back in.  A call to the surgeon and she was setup to come in first thing Thursday morning to have it replaced.  She has an appointment for the end of June to change it and has been very anxious and upset about the process.  We were able to setup an appointment for her at KidsPath shortly before so that she would be able to prepare for the day.  Unfortunately all that has to be skipped now.

I prepped her the best I could and we talked about what would happen. She was somewhat receptive and then didn't want to discuss it anymore.  Unfortunately the fear and anxiety remain.  When she is stressed she stops sleeping and sure enough it took an extra couple hours to get her to bed. At 3am she was awake again unable to sleep and was awake for the day. Not the best start. She was upset about going to the hospital, but didn't resist too strongly. So we packed up one of our kits and headed off.

Carter lovingly wanted to help and took the waiting time to explain all the parts to her again. She wasn't too happy.

Before Dr. Pranikoff came in we met with one of the medical students so she could take a history.  (Is it just me, or are med students children these days?! I feel like I could have been her mother!) She was very sweet and gentle with Julia.  It was so weird to go through the past few years backwards. We talked about Julia's tube and what had happened to it, then her recent surgery, then her bowel history.  It wasn't until the end that we even mentioned the cancer. Then they bring up how great she's doing.  Dr. Fortunato does the same thing.  I have such a hard time with this right now.

Yes, we are immensely thankful beyond belief that she is NED.  We know we are the lucky ones whose child has survived the first 2 years.  We are SO thankful she is able to be a typical child developmentally and spend time with her friends.  But we are in this new place that still controls us.  Every night we eat dinner and then start administering her medications.  She then spends the 2 hours before bed sitting in the bathroom on the toilet.

This is every night.  No walks, no playing outside, no hanging out with friends, no trips for ice cream, no date nights or babysitters, no family time with all of us together.  It is just our life now.  The doctors all tell us how great it is compared to our lives before.  It is better and more predictable, but it leaves us little wiggle room.  And we are in this place for years. It is better, but it is still not always easy to handle. 

And in the same breath I feel guilty for even complaining because so many of our other Wilms' friends are struggling for their very lives right now.  Emma preparing for stem sell transplant, Ruthie with a dangerous growth on the remaining part of her kidney, Michael at the end of his battle finally able to be transferred back home on hospice, Benjamin preparing for kidney transplant (as if bilateral Wilms' and 6 relapses weren't enough), and Caden and Franklin battling tough relapses right now. And Meghan, Jay, and Riley who have earned their angel wings this past month. 

I just hate to see her have to compromise over and over again and sacrifice just being a kid.  I hate that the treatment that saved her life has come at this price for her future.  I hate that is still brings her pain and suffering. I hate that cancer still has this control over us and sinks its claws in deeper into our daily lives.

The tube change went well.  Julia was not happy about it, but she did cooperate willingly.  Dr. Pranikoff changed it out and then removed it so I could do it in front of him.  It wasn't bad and Julia even tried to help at one point.  Then he decided he needed to treat the new growth of granulation tissue at the wound site.  Unfortunately removing it in May only lasted for two weeks and now its back.  They got out the silver nitrate sticks. Julia hates this procedure.  As soon as he began she was screaming and writhing in pain.  He said it stings and burns a lot to do.  I hate standing over her holding her down looking into those pleading, screaming eyes. It stabs deep in the heart every time. As he worked his way around it was apparently a very vascular growth and it began to squirt blood from several areas.  Ugh, I hate this.  We finally finished.

Dr. Pranikoff said we are set now for home maintenance off the cecostomy tube.  We just have to come back every time she grows more granulation tissue.  More than just a side note.  I am scared to even estimate this could be a monthly or even more often occurrence, but sadly that has been the track record lately. We will have to wait and see.

She has learned to bargain and her leverage this time was getting to play at Claire's house when it was over.  We happily obliged.  She was somewhat fragile, but overall had fun playing outside.  By the time we headed home this afternoon she was wiped out...

Welcome Summer!

This week we welcomed summer into our backyard.  Summer seems to have arrived in a high speed truck that has smacked us with 100* heat indexes day after day.  How do we fight back? We break out the water!
The kids were ecstatic to dust off the kiddie pool and the slip 'n slide...

Unfortunately with her cecostomy tube in her abdomen, Julia is limited to sliding on her knees, but she is learning to adapt. Carter decided to try her approach, too...

 Nothing says summer like lunch outside in your bathing suits...

Carter still loves taking care of Jenna and Natalie (Shana's twins).  These pictures of him and Jenna just melt my heart...

Memorial Day

We have a had a great time this week with our family here. We celebrated the holiday with some family time.  The boys went to the Hoppers baseball game, while the girls picked out fabric for sewing projects.  We enjoyed some family game time...

and sports.  Whatever they can't catch on TV can be found on the computer.  Like grandfather, like grandson.  These two are two peas in a pod...

In a break from tradition, instead of a cookout, we had Japanese :) a family favorite.

Grandpa and Julia enjoying their "date"...

Mimi teaching Carter about sushi, maybe one day in his future...

It was a great day of simple joys.  So thankful on this Memorial Day for the freedoms that rule our lives from the foundation of our country to the simple rights we enjoy daily.

As a Marine Corps brat I had the privilege of being raised with a front row seat to what it means to serve our country and to stand for the values of our great country. We were fortunate to be part of a rather peace-filled generation on our homefront.  We were sandwiched in between the sacrifices of so many. Freedom is never free and so many have put their lives on the line to preserve what we hold true.  For every person in uniform who has volunteered to stand on the front line.  We thank you.

And for the families and friends that send them off with a kiss, a prayer, and a wish we thank you for your gift.  It is the prayer of every one of us that we can return your precious gift safely back home to you. Godspeed. 

Some more touching reunion shots and memorials here.

And for those that give their lives we are forever indebted.

 

""Grateful are we who sleep under a blanket of freedom 

from those who sacrificed" 

Cambridge American Cemetery, Memorial Day 2011.